Joseph was born with a genetic disease in his body that was not discovered until after his early years. The disease is difficult to diagnose before the child is 3 or 4 years old, and while Joseph was growing up little by little before his parents’ eyes, the disease was silently growing inside him. Unable to experience “demonization” and a lot of movement, he quickly found himself unable to control his movements and what awaited him was much more difficult.
His health did not deteriorate at once, but rather in stages, but his parents had to tell him the truth of his condition and illness, because he would not be able to walk for a long time.
This incurable genetic disease, and sufferers often die in their mid-twenties, stalked Joseph until his parents discovered at the age of three that he had a genetic disease called duchenne muscular dystrophy. And here the journey of agony and treatment began!
Joseph listened to all the details of his illness, he was not yet 6 years old, and his parents could not hide the truth any more, because he would not be able to walk like other children, and he would end up in a wheelchair. Usually children with this disease are unable to walk after the age of eight, but his parents’ keenness and intense focus on physical treatments and avoidance of movement made Joseph gain additional years.
At the age of 12, Joseph became in his wheelchair, this chair which became a part of him and his daily life in a large way. Despite that, his illness did not prevent him from completing his education, and today he graduated after specializing in “Graphic Design” from competencies.
Joseph felt the decline of his muscular-physical abilities in every detail, his determination to persevere pushed him forward and not give up. His father, Shahan Kyriakos, tells “Al-Nahar” the difficulty of the situation today. Everything has become very expensive. Even his treatment, which the Ministry of Health was providing during the reign of former Minister of Health Ghassan Hasbani, was stopped due to the lack of money in the ministry, as the annual cost of treatment is about 700 thousand dollars.”
For years, the family has been trying to secure the necessary physical sessions and medical equipment to prevent Joseph’s condition from deteriorating rapidly. It is true that they have no ability to stop this genetic disease, but they have no choice but to try and gain time and the rest is “on God”.
Everyone knows that the end of this disease is death, but it is unfair to give up and leave him to his fate, so his family is trying to preserve what he is today and avoid the rapid deterioration of his condition.
Joseph witnessed death in the lives of his two friends who died of the same disease. He knows exactly how the disease will end, so he wants to live what is left of him with joy, telling his parents: “I want to benefit before I die.”
His father’s cry today is not to secure daily physical therapy or sessions, as Joseph was subjected to in the past years, but his request is much more simple, which is to secure an electric bed for him to sleep on because his condition no longer allows him to sleep on a regular mattress.
They did not leave people with many options. The country has been in crisis for two years, and the people’s condition has gone from bad to worse. Shahan knows that “the situation is difficult for everyone, but he cannot stand and watch his suffering son, who cannot sleep well because of a mattress, because his hands and feet are lumped together.”
His father admits that everything has changed and the cost has increased exponentially, “as we can no longer subject Joseph to daily physical sessions after the cost of one session was 50,000 pounds, while today it has become 500,000 pounds, which prompted us to reduce the number of sessions to two sessions per week. “. The prices of all the medical equipment needed by Joseph in his condition doubled, even the breathing machine, which cost them $6,000, is governed by the feeding hours decided by the generator owners and the electricity company.
Today the father asks for help from the white hands, a little makes a lot and giving blooms more.
For those who want to help, please contact the following number: 03/765272